Yes, Migraine IS a Disability

Migraine disease is one of the 20 most disabling medical illnesses in the world and the 12th most disabling disorder in the United States. More than 90% of migraine suffers can’t function normally during an attack, and the World Health Organization has stated that severe migraine attacks are as disabling as quadriplegia. (For more migraine statistics, click here.)

Why then are we, who suffer from the disease, so often reluctant to acknowledge migraine disease as a disability?

For me, the answer is deceptively clear: I don’t want to be disabled.

The stigma of disability

In the United States, disability carries stigma, especially when the disease is something no one can see (i.e. invisible illness). People who are bedridden or housebound from illnesses like migraine, fibromyalgia, depression, or chronic fatigue syndrome are often considered lazy, flaky, or simply “less than.” If I’m honest, though, my reluctance to acknowledge my disability stems more from my own feelings of uselessness than from any external judgment.

Migraine impacting all aspects of life

I hate when I can’t work a full day, clean the house, take care of my children, and/or attend a friend’s special event. I can’t stand when my migraines are bad enough I begin to fear making plans in advance because I know I’ll have to cancel them when the next attack hits. I loathe even one day of being curled up in the dark, unable to live my life as I’d like.

To admit disability, then, means admitting that this isn’t a one-off event. That days like this – when I feel like so much less than the woman I know I am – will happen again. And again. And again.

Being sick indefinitely with no migraine cure

It means admitting that I can’t go to graduate school or law school like I’d once dreamed, because I can’t realistically commit to such an intense level of work on a long-term basis. It means acknowledging that my career options are limited by my environment (any job under fluorescent lights in which I stand on my feet for hours on end, for example, is out). It means admitting that I will be “like this,” sick, indefinitely.

This is what I am most reluctant to admit: the continuity of my disease.

There is no cure for migraine disease, at least not yet. And, though my migraines do get better, they also get worse. Some months, I may have only a couple per week. Other months, depending on the weather, I’m bedridden nearly every night. My disease changes, but it is always present.

Practicing self-care

Thankfully, I have arranged my life in such a way that the disabling impact of migraine disease is easier for me to handle than it is for others. I work for myself, homeschool my children, and live in the country. If I don’t feel well enough to meet an obligation today, there’s always tomorrow. I practice good self-care and I stay as prepared as I can for the bad days. But those bad days, inevitably, come. And, when they pile up, day after day, week after week, I am forced to remember the one thing I’d prefer to forget: I’m sick.

Migraine disability assessment

I imagine other migraineurs may feel the same. (Fellow Migraine.com author Kerrie Smyres has posted on this very thing.) If you’re one of them, consider taking a look at the MIDAS (Migraine Disability Assessment) questionnaire to see how migraine disability is calculated – the results may surprise you. (Chronic migraineuers, however, may want to check out the Headache Impact Test instead. Also, if you are one of the many chronic migraineurs who is unable to work at all, click here for tips on how to apply for Social Security Disability.) Acknowledging the reality of your disease and/or receiving objective verification that you are truly, disabling, sick (if you are) can be a life-changing event.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (13)
  • greeneyednanny
    3 months ago

    I had no idea one could now get disability for migraines. Last year I checked the Social Security site and migraines were not on the list of ‘acceptable’ conditions. I’m retired and collect SS now, but this would’ve been a big help when I had to stop working at 46 due to the migraines. I’m happy for those who have been able to get the needed disability.

  • kimmersutphin
    10 months ago

    I got lucky and was able to get disability and then like the couple of months I had so much paperwork and miss so much work and was on FMLA and just could not make it to work they approve me the first time without having to go through too much trouble

  • Sarah Hackley author
    9 months ago

    I’m so glad you were approved! Thank you for sharing with us. I hope your success gives hope to some other people who are still struggling to get approval.

  • grammayumyum
    10 months ago

    In applying for disability, they want proof that you can no longer work even 33-50% of the time. Also, they deny the majority of applications in the first round. Appeal, appeal, appeal. I appealed every denial I received. The week before my last appeal was supposed to go to administrative law hearing with a judge, the judge called me. He had been reviewing my case, and had no idea why I had ever been denied. He said my case was black-and-white and should have been approved with the first application. He approved disabilty without a hearing. It took two years. And yes, filling out every one of those forms was like being assaulted, because I had to relive every single thing that had been taken away from my health, my family, my work, my community life, etc…

  • Sarah Hackley author
    10 months ago

    Congrats on your approval! That’s wonderful news!

  • Msmmain
    1 year ago

    I’ve had chronic migraines for the last 10 years: 4-7 days/week in bedridden, and I applied for disability twice in that time, and I was declined both times. The first time was about 6 years ago and they basically said “migraines are not debilitating and youre too young to need it (I was 25 or so)”; the second time was 3 years ago and they again essentially told me: “migraines are not debilitating and you are able to work full time while having them, Fuck off”. Ive been afraid to apply since then. Every application is heart wrenching and the denials are like being stabbed in the gut. I’m afraid to go through it again, and yet I’m barely getting by on temp work & by selling stuff online (my own as well as other people’s for a commission). The only reason I have anywhere to live is because of my boyfriend but not being able to pay 50% of everything is hurting us too. I’m between neurologists so I don’t even know what documentation I can provide. :'( I’m overwhelmed and I feel like its hopeless to try for disability again…

  • Sarah Hackley author
    1 year ago

    I understand your frustration. Obtaining benefits can be a long, hard battle. Many times, however, if you’re persistent, you will get approved eventually. Maybe this article can help with a next step: https://migraine.com/blog/10-things-you-should-know-about-chronic-migraines-and-applying-for-social-security-disability/. Good luck!

  • Macbeck
    1 year ago

    THANK YOU!! It’s just one of those things, you know you’re not alone, but nice to have that verification sometimes. I’ve been officially disabled for nearly 2 1/2 years now, and yes, sometimes people still say “I hope you get better soon.”

    I won my disability in 3 months because I am a “retired” nurse, and knew that documentation was key – I took in daily documentation of symptoms, treatments & impact for nearly a year when I applied. I didn’t even have to see another doctor, and had to wait for my payments to start. Though I really should have stopped working a year sooner than I did.

    It is incredibly difficult to reach the point of acceptance that we truly must stop working to best care for ourselves. Thank you again to Migraine.com for your continued support.

  • Sarah Hackley author
    1 year ago

    Congratulations on winning your case; documentation is definitely key!

  • Sheri Z
    5 years ago

    Red2,
    I’m so sorry you having to go through the pain of daily migraines and that you’ve been denied SSDI. I’m one of the rare migrainers that was approved for SSDI within 2 months. I am by no way an expert but I did take the advice of those on this site, especially Diana Lee, and completed the questionnaire based on the inability to work due to migraine disease rather than focusing on the pain. Something I didn’t expect when completing the paperwork was how emotional and depressing it would be completing the forms. When you put pen to paper and document all the ways that migraine disease effects your life it is very sobering. Those of us who have migraine disease realize how disabling it is. I pray that you find some relief soon.

  • red2babe
    5 years ago

    I 100% agree that it is a disability and I fight it more often then I want to admit, even on my daily medicines. But why when I applied for disability and SSI did I get denied? What more do I need to do? I need help. I have brain lesions on my frontal lobe along with the chronic migraines and without the daily medicines I can not leave my dark bedroom at all, on the medicines I can almost be human until I do have a migraine, then when I have one it can last for a few hours or up to days. And my employer does not understand, she says she has migraines too while at work but I don’t see how. She has lowered my hours the following week just because I have called in before. I have to work, we need both incomes to be able to pay bills in our family. I have had this medical problem since 2005, when the migraines and brain lesions were first found then too, since then every MRI shows more lesions. No answers either, no health insurance yet either. So I am stuck.

  • Diana-Lee
    5 years ago

    According to the 2010 Global Burden of Disease Survey, Migraine is actually considered the 7th most disabling condition globally.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3606966/

  • John Benjamin
    5 years ago

    Only those people who had not experienced the restrictive nature of migraine would not perceive it as a disability. The notion of finding what helps,your own list of a developed self management as mentioned is important.

    Take care, hope you have a less painful day.

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